Last year we invited young people and caregivers in the Growing Up in New Zealand study to share a copy of their existing study data with StatsNZ for inclusion in the Integrated Data Infrastructure (IDI).  Now, in the 17-Year Data Collection, it is time to answer that question again.

If you are part of Te Rōpū Pīata Leading Lights, then you won’t have recently been asked about data sharing. The Leading Lights play a vital role in Growing Up in New Zealand. Therefore, as part of the 17 -Year Data Collection consent process you are being asked about sharing your data with StatsNZ. Your feedback and insights help shape how information is collected across the wider study, but because this is a test, your data will not be shared with StatsNZ regardless of what you decide.
   

Sharing your data with StatsNZ – it’s your choice

You are being asked to decide if some of your Growing Up in New Zealand data 17-Year Data Collection can be securely shared with Statistics New Zealand (StatsNZ) for use in a large research database called the Integrated Data Infrastructure (IDI). This is completely optional, and what you decide will not affect your participation in any part of the study going forward.  
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Below is some information to help you understand what’s involved, what gets shared, how your data are protected, and what it means if you say yes - or no!
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About the IDI

The StatsNZ Integrated Data Infrastructure (IDI) is a large research database. It holds de-identified data about people and households. The data is about life events, including education, income, benefits, migration, justice, and health. It comes from government agencies, StatsNZ surveys, and non-government organisations (NGOs). The data is linked together, or integrated, to form the IDI. Researchers use the IDI to conduct research that provides insight into our society and economy. The research can help answer questions about complex issues that affect New Zealanders.

How are your Growing Up in NZ data kept safe
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Discover how your Growing Up in New Zealand data is kept safe, how it’s already making a difference, and how sharing it can help create even more impact.

1. Safe people – Researchers commit to making sure that they will be responsible when using data
2. Safe projects – Researchers must focus on finding insights and solutions to issues that are likely to have a wide public benefit. 
3. Safe settings – Data can only be accessed through a secure virtual environment from approved research facilities, and the IDI is on a separate server that is not connected to the internet
4. Safe data – Data that is available to researchers is de-identified, and they can only access the data they need.
5. Safe output – all information is checked to ensure it does not contain any identifying details.

Frequently asked questions

What am I being asked to decide?

• You are being asked to decide whether you would like to share a copy f data from the Growing Up in New Zealand 17-Year Data Collection with StatsNZ for use in the Integrated Data Infrastructure (IDI) database.

What is the IDI, and why does it matter?

• The IDI is a secure database run by StatsNZ. It brings together information from different government services, such as health and education. Using the data together helps researchers understand big-picture issues that affect people in Aotearoa New Zealand, including young people and families.
  

Why would I want to share my Growing Up in New Zealand data?

• Your experiences are vitally important. By linking your Growing Up in New Zealand data with other information already in the IDI, researchers can explore deeper questions about health, development, and wellbeing. It helps ensure children, young people, and whānau are represented in research that shapes future policies.
  

What kind of data would be shared?

• The data shared would include most of the information you have given in the 17-Year Data Collection questionnaire. StatsNZ will also receive your National Health Index (NHI) number (which will be de-identified so no one knows it belongs to you) so they can link your data to other datasets safely.
  

What won’t be shared with StatsNZ?

• No names, contact details, addresses, personal comments from open-ended questions will be shared with StatsNZ. Any information shared is de-identified and kept confidential.
  

What happens to the data once it’s shared?

• The Growing Up team will securely transfer the data to StatsNZ, where it will be de-identified and stored safely. Only approved researchers working on projects in the public interest can apply to use the data, and they must follow strict rules, including accessing only what is necessary to answer their research questions in secure, controlled environments.
  

Who decides what the data can be used for?

• StatsNZ is responsible for reviewing and approving research projects. They ensure each project is for the public good, follows ethical guidelines, and uses data safely. The Growing Up in New Zealand team doesn’t make these decisions, but researchers may consult them for advice.
  

Can I change my mind later?

• Once your data is shared with StatsNZ and added to the IDI, it can’t be withdrawn because it’s been de-identified and linked with other datasets. But you will be asked again if you'd like to share data in the future, so you’ll have a choice each time whether you want to share new data with the study.
  

What if I choose not to share the data?

• That’s completely okay. You’ll still be part of the Growing Up in New Zealand study, and your data will continue to be stored securely at the University of Auckland. It will still be used for research that supports better outcomes for children, young people, and families in Aotearoa.
  

I am living overseas now — does this still apply to me?

• Yes. If you give permission, your data will still be shared with StatsNZ. It can still help build a fuller picture of what life is like for children and families, no matter where they are now.